As I write this I can feel tears fall down my face and my heart break just a little bit more. I have never felt so torn in my life – physically and mentally. Since my diagnosis I haven’t really come to terms with what I have for many reasons… sometimes my doctor thinks other things, sometimes denial and most importantly I am stubborn as a door nail.
I feel like the minute I “fully” accept this – being sick, having a disease I basically have no control over, which attacks my very own body – I worry the next moments after will become the largest domino effect yet in my life.
I am in a battle with myself, not just because I have lupus. It is because my disease makes me feel like I have to choose between the person I used to be and the person my disease makes me. Throughout the day I have to decide which me am I going to be. Sometimes I have no choice because my body makes that decision for me: the sick me.
Mentally this is hard, really hard. I want to be the girl who had so much energy she could do anything she set her mind to. I want to be the girl who would lay out in the sun for days without sunscreen and have no cares in the world. I want to be the girl who doesn’t wake up in the morning wondering about when she will go to sleep. I want to be the girl who doesn’t have to stop everything she is doing because she is in pain. I want to be the girl whose life isn’t so difficult.
The person my disease makes me is someone I am not too familiar with… she’s cautious, reserved, quiet, always in pain and some might even call her “boring.” She can’t go a day without pain. She can’t go a day without something new popping up in her body. She can barely make it through a whole day of work. She worries that one day her legs will just give out in front of her.
Most of all, she doesn’t go a day without being insecure. Insecurity is a terrible feeling and my disease makes it worse. I am embarrassed when I can’t walk, when my hair falls out, when I can’t do things by myself or when I have to sit down after doing something for five minutes.
I worry about my husband and who he now sees in front of him. I know I’m not the same girl he married. I worry about my family and how I let them down. I also worry about myself because there were so many things I wanted to do and have by now that are now so far out of reach. This fork in the road took my life down a very complicated path.
I stand in front of the mirror wanting to be the non-sick version of me. I can put on tons of makeup and get my hair done, but that’s just the outside – a lie of what’s going on inside. But as time goes on, she is slipping away more and more.
I don’t want my illness to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself. I try so hard to not give into my illness but I have come to a point where I cannot keep going at the rate I once did. My body is telling me I need to make this change. I don’t want to listen. I know I will have to find a balance and I will make it through this.
It’s OK to cry, to grieve who I used to be, but it’s not OK for me to give up and stop fighting. I will have my tough moments, but I must not let them take over. I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.
Previously published on https://themighty.com/2017/10/conflicted-missing-old-life-accepting-lupus/